We are so close: Petition to Dr. Davis to include viral research!

[SgtGerryBoyle]

Finally, serious research is being deployed into physical causes of ME/CFS, giving hope to many who had given up hope for a better future and had resigned themselves to a life of ill health with very little prospect of improvement.

I for one am very happy that serious research is being deployed into ME/CFS. I rejoice in the momentum research into this illness has finally reached. Still, I'm not fully on board with the leading research initiative, the End ME/CFS project headed by Dr Ron Davis. From what I've read here on the board is I'm not alone in this respect.

Although I have donated to the OMF (Open Medicine Foundation) to support their research I feel there is a very large causal part of ME/CFS not being included into the research program, for reasons unbeknownst to me. There does not seem to be any research included in the End ME/CMS into viral causes of ME/CFS.

Research on potential viral causes of ME/CFS, especially aimed at enteroviruses (Coxsackie B, echovirus) is vital for me to fully support (and fund) the End ME/CFS project.

For me personally, this stems from the research of Dr. Chia and his demonstration of enteroviruses in stomach-biopsies. Although I lack the means of having a stomach biopsy done in my place of residence, I saw many parallels between an enterovirus infection and my personal symptoms. My belief in an enterovirus being a (could be more going on) causal factor in my ME/CFS has been further reinforced with the excellent results I am getting on Oxymatrine, a treatment recommended by Dr. Chia.

In short
We are so, so very close. The discovery of causal factors in the development of ME/CFS might be around the corner. Treatment might be around the corner. This is the moment to act, for science to have an open mind, truly hear patients and include a potential causal factor in their research that I feel many here have a strong belief in.

With this post I would like to gauge interest in setting up a petition, directed to Dr. Ron Davis and his team, to consider including (entero)viral research into the End ME/CFS Project.

Also, in addressing Dr. Davis, I would like to support the case of doing so by including a scientifically compelling rationale. Here, I'm referring to research done in the UK towards enteroviruses (which had been dropped) and the research done by Dr. Chia. I am kindly requesting help from one or more individuals with a medical-scientific background to make a convincing case.

If you're up for this petition, please, please respond to the poll or a short reply! Results only viewable by voting!

 

[knackers323]

Ask @Hip about enterovirus

 

[percyval577]

There has been done a lot of research on viral ongoing infections,
here a review from 2018, Rasa et al: Chronic viral infections in [ME/CFS]. It´s open access.

Although I have donated to the OMF (Open Medicine Foundation) to support their research I feel there is a very large causal part of ME/CFS not being included into the research program, for reasons unbeknownst to me. There does not seem to be any research included in the End ME/CMS into viral causes of ME/CFS.

There are other impacts known, which are not possible to be ongoing. Then the review, looking for ongoing infections seems to me a dead end. It cannot explain delayed PEM and Pacing anyway, at least not directly.

If you ask me the question must be: "What could these triggers have altered? What are the properities of these pathogenes, chemicals?" Though it might seem to be too airy.

Research on potential viral causes of ME/CFS, especially aimed at enteroviruses (Coxsackie B, echovirus) is vital for me to fully support (and fund) the End ME/CFS project.

With this post I would like to gauge interest in setting up a petition, directed to Dr. Ron Davis and his team, to consider including (entero)viral research into the End ME/CFS Project.

The generel problem with research is that it is open end, nobody knows what will show up, a lot of findings are made by coincidence. Looking from above, it´s a random process. (It looks dangerous to me when states starve their financing of science.)
Within the science there is argumentation of course. (You are - of course - free to buy researchers.)

Davis has looked at infections, and he said they would have found especially low infections in PwME compared to HC´s (one of his videos, I guess it was september 2018). Without very good arguments you will not influence him.


Speaking for myself I became ill in 2001, was quite fine in 2009, relapsed heavily in 2010 and since 2015 I am slowly and constantly improving. Although I started with the idea that I would have an ongoing borrelia (esp. Aguire et al 2013) infection, I am now convinced that borrelia have altered my iNOS maybe only for some time, but the alteration stays. I can reverse that, but need also to help subsequent effects which are more difficult to determine (but additional influences work nevertheless). If you ask me, it´s a trapped breakdown of firing-geometry in thalamus and basal ganglia (with many possible consequences).

 

[wigglethemouse]

See Item 4

https://twitter.com/i/web/status/1137443046080024576

 

[SgtGerryBoyle]

Thank you @wigglethemouse - so good to hear that Prof. Davis and his team is actually looking into potential viral origins.

 

[nyanko_the_sane]

Thank you @wigglethemouse - so good to hear that Prof. Davis and his team is actually looking into potential viral origins.

I guess this means if there was a virus at work in the severely ill, it would have been found by now, or will be found soon. That is if they can get enough funding to continue the search.

The generel problem with research is that it is open end, nobody knows what will show up, a lot of findings are made by coincidence. Looking from above, it´s a random process. (It looks dangerous to me when states starve their financing of science.)

There is a bit of sloppy science going on, just look at the study using patient 23andMe data. Their findings were tainted by math errors, and as a result they came up with all kinds of wacky markers that likely have little to do with finding a cause or cure. Serious science should probably be left to serious researchers, not students seeking extra credit. Not sure if this was actually the case, but it sure seemed like it. A lot of people were excited to see the results of that study, only to be met with disappointment.

We can't pin all our hopes on serendipity, it is the hard work of people like Dr. Davis and his team that will light the way.

 

[percyval577]

We can't pin all our hopes on serendipity, it is the hard work of people like Dr. Davis and his team that will light the way.

@nyanko_the_sane I didn´t adress bad science. Even good science is unpredictable in its outcome.

That does not mean that there wouldn´t be reasoning and arguments, and propper doing.

Science is a precious thing. Generel speaking, we destroy it when we restrict it to specific purposes.
Research is like a play, it is subject to creativity. You will not influence any (good) researcher by an opinion.

This does not say that it wouldn´t make sense to finance specific research (which hopefully won´t be biased).

On the long run you get important outcomes from science (sometimes) that seems at first glance completely useless.
I remember that Einstein said somewhere that he didn´t like the spirit of seriousity,
(and he was concerned about the course of the world, in view of war and crime, indeed).

@IThinkImTurningJapanese said it recently especially well, I think.

Don’t try to get things done. That’s too hard. Too painful. Too annoying. Too prone to failure.
Do try to increase the probability that they will get done.

So research on cancer e.g. needs to include bold exiting guesses.
And research on psychosomatic needs to say that they do bold guesses (but they don´t, and this is pot. crime).
Research on ME/CFS needs more funding.

I say again, that does not mean that there wouldn´t be arguments at work, hopefully.
If you ask me, PEM and Pacing are outstanding in our illness, though it might be hidden in a lot of cases nevertheless. Then PEM is not a concrete symptom, so that´s already a challenge, right? (A huge one.)
The question must be:

Why would PEM occure?
How can it be that the same amount of effort but in different actions can avoid PEM?

How much sense will it make to come up with guesses that don´t pay attention to this main thing properly?
So, if you finance stupid science because science is also "a play" (as I said) it will not be helpfull in our urgent situation.
In that sense I agree with serendipity vs. hard work.